Choosing genetic defects?

by Dr. Bertalan Meskó on December 5, 2006

Sometimes I have to wait some minutes before commenting a newspaper article. New York Times has a report on parents who are affected with a genetic condition or disorder and want their children to have the same problem. How can it be? Preimplantation genetic diagnosis ( P.G.D. ) is a process in which oocytes are fertilized in a test tube and their DNA is analyzed before being transferred to a woman’s uterus. It’s a very early form of prenatal diagnosis. In this manner, embryos destined to have, for example, cystic fibrosis or Huntington’s disease can be excluded, and only healthy embryos implanted.

A lesbian and deaf couple from Maryland who both attended Gallaudet University and set out to have a deaf child by intentionally soliciting a deaf sperm donor.

“A hearing baby would be a blessing,” Ms. Duchesneau was quoted as saying. “A deaf baby would be a special blessing.”

So because of their disorder, they also want their children to suffer. By the way, we can understand these parents as many of them share a touching faith that having children similar to them will strengthen family and social bonds. But should we manipulate our children for our pleasure? An other example:

Mary Ellen Little, a New Jersey nurse with dwarfism, had her first daughter before a prenatal test for achondroplasia was available. For her second child, she had amniocentesis. “I prayed for a little one,” meaning a dwarf, she told me.

And the opinions of the doctors:

Still, most providers of P.G.D. find such requests unacceptable. Dr. Robert J. Stillman of the Shady Grove Fertility Center in Rockville, Md., has denied requests to use the process for selecting deafness and dwarfism. “In general, one of the prime dictates of parenting is to make a better world for our children,” he said in an interview. “Dwarfism and deafness are not the norm.”

Dr. Yury Verlinsky of the Reproductive Genetics Institute in Chicago, who also refuses these requests, said, “If we make a diagnostic tool, the purpose is to avoid disease.”

But both doctors said they would not oppose sending families to other doctors who might consent.

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I had a college friend who married a man with a eye disorder that lead to blindness by the early 20’s…I recall her telling me in a letter they had two boys…She added:”If they go blind,their dad can help them adjust.”
maybe it’s just me,but I found this attitude very disturbing. I told her how I felt and needless to say,she never wrote me again.

I admit that this trend is surprising, and perhaps disturbing, but I think it is highly inflammatory to say ”they also want their children to suffer”—I see no indication of that in the article. Genetic testing opens up new areas of analysis and ethical consideration, and this is an issue that will need careful thought—what makes a disability or a disease?

I take special exception to your comment that this may be against the Hippocratic Oath? How, exactly, do you feel this would violate it? Are you harming the deaf embryo/child by allowing him to be born?

First: I didn’t want to hurt anybody. I plan to become a clinical geneticist, so I meet people with genetic conditions, disorders everyday. And I see and know that they do suffer. Yes, we must be cautious with these terms, but we shouldn’t lie to ourselves. If I’m blind, then I have to make a lot of extra steps (by the way, it makes me stronger).

With the word suffer, I wanted to express the difference between :
* I have a child with a genetic condition
* or I want my child to have a genetic condition

These are far not the same things.

Second, according to the oath, we, medical doctors, students, etc, must do our best to help people against diseases, conditions. If someone asks me to blind his/her child just because he/she is blind too, then I can’t do it even if I’d like to.

I am not lying to anyone. The way you state it—“they also want their children to suffer”—implies that the suffering itself is the goal of the parent. While I agree that it is likely that someone with these conditions would suffer, the sense I get from the article is more that the parent is seeking a sort of cultural bond with the child, not that the parent wants to torture the child per se. There’s a big difference.

And I think you’re way off with your second point. No one is talking about ”blinding” a child; in fact, I don’t know if we even have the technology to alter a child’s genes like that. What’s being discussed is examining various embryos, and specifically implanting one with a gene for blindness, and as a future clinical geneticist, you should know the difference. While I may think this is a bad idea, I certainly see no basis for claiming the Hippocratic Oath somehow contradicts this, and I’d be interested if you would quote the part that you think is violated. Allowing a child with a genetic defect to live is not considered a harm by any standard ethical framework in place today.

Of course, I didn’t mean they actually blind the child. You said: “Allowing a child with a genetic defect to live is not considered a harm by any standard ethical framework in place today.”

But if you choose a somewhy “defected” embryo in case of you could choose a healthy one is the same as if you would cause harm to someone. I see your point, but I still believe that this method is not ethical. You have the opportunity to have a healthy child, and you choose one with a genetic condition, disorder just because you have the same. We shouldn’t make a decision like that.

I’m not saying I feel it’s worth it, but you should be able to argue your points without resorting to exaggeration or misleading wording.

But if you choose a somewhy “defected” embryo in case of you could choose a healthy one is the same as if you would cause harm to someone.

That is an absurd statement. It is not the same at all, whether or not you are able to grasp the difference. I will ask you again: whom are you harming?

I see your point, but I still believe that this method is not ethical. You have the opportunity to have a healthy child, and you choose one with a genetic condition, disorder just because you have the same. We shouldn’t make a decision like that.

I did not say it was ethical, nor did I say I would make such a decision. My argument is with the false and misleading statements you used to defend your position, not the position itself.

ok listen both of you! first of all, parents should not have the right to determine what their gonna look like and how they will behave. just because the parents is deaf doesnt mean the kid wants to be deaf. did you ever think that maybe your child would want to experience life in a different way. just because my parents are deaf doesnt mean that if im deaf im gonna be closer than to them than if i wasnt deaf. parents are so selfish that want to do this to their children. its one thing to help the child but its another to hurt them. STOP TRYING TO PLAY GOD!

In my opinion, it is an obligation of those who wish to have children to do everything they can do to be sure the children are healthy. So: be attentive to diet, non-smoking, alcohol, and all those things, of course. But also, we should not give birth to a baby known to have very serious genetic defects, problems so serious that the child would have no quality of life, or perhaps not even survive long after the birth. Instead, the woman should abort and then have a healthy child later. We have the ability to identify many genetic defects before birth. We should use that knowledge. Why not have healthy children when we have the ability to choose? I believe it is a moral obligation for the sake of the child that we birth a healthy baby when we are able to choose to do so.